While I was at the open Conversation on prostate cancer last weekend, one story really caught my interest. Dr. Arnon Krongrad was speaking when he mentioned a story of a patient he operated on. The patient wanted his prostate removed even though he has two negative biopsies. The reasoning was real; His father, brothers, uncles ~ all had prostate cancer and had died from it. With the two biopsies a total of 18 cores showed no cancer. The doctor agreed to remove the prostate only if he tested the lymph nodes first and they were clean. The lymphs were clean but the prostate was nearly wall to wall cancer as Dr. K described it. Watchful waiting was out for this patient when the biopsy said no cancer.

When this session becomes available in the next few weeks I will link the video here.

Tony

Age 46 (44 when Dx)

Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007

Tony, know its not the intent of your post, but you are almost making a good case for surgical treatment of PC, because the only way to know for sure is to get the prostate out, lymphnodes, seminal vessels, etc. and see the extent if any. I was surprised this guy found a surgeon that would do it under the circumstances you described, but good for him, he was proactive for his own body, and in this case he was right. Biopsy's miss all the time, took me 3 times to hit pay dirt, others even more times, I am convinced my cancer was there on the first biopsy 18 months earlier, wished it had been caught then, might have been a more managable gleason 6 instead of the now probmatic gleason 7 I have.

best to you brother,

david in scAge 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5

3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3

Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9

David,Absolutely not a surgery statement. In fact, I listed only one thought about modality and that was about watchful waiting. Just saying that it is a difficult because one of the other things mentioned at the open Conversation was that we have very little ability to predict which cancers are indolent or life threatening. This patient did not want to even watch and wait on a positive diagnosis and he blindly guessed right. Whether it's with surgery or an ablation therapy he needed action when the biopsy said otherwise. Very thought provoking I think.

TonyAge 46 (44 when Dx)

Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007

I agree, it's a radical step to have the prostate out while the biopsies are showing negative.

Tony, were there any other indications of PCa -- like an abnormally rising PSA? And do we know the age of this patient?Pre-op:Age 63 at diagnosis, now 64.No symptoms; PSA 5.7; Gleason 4+5=9; cancer in 4 of 12 cores.Operation:Non-nerve sparing RRP on 7 March 2008.Two nights in hospital; catheter out after 7 days.Post-op:Continent; no pads needed from the get-go.Pathology showed organ confined and negative margins. Gleason downgraded to 4+4=8.PSAs:6-week : <0.057-month: <0.0513-month: 0.07 (start of a trend?)ED:After a learning curve, Bimix injections (0.2ml) are working well. VED also works but we find it inferior to Bimix.

I would think that some other methods such as color doppler or an MRIS would have spotted a cancer that was throughout the prostate. This was a radical solution to a suspected problem. JT

64 years old.

I had an initial PSA test in 1999 of 4.4. PSA increased every 6 months reaching 40 in 5-08. PSA free ranged from 16% to 10%. Over this time period I had a total of 13 biopsies and an endorectal MRIS all negative and have seen doctors at Long Beach, UCLA, UCSF and UCI. DX has always been BPH and continue to get biopsies every year.

In 10-08 I had a 25 core biopsy that showed 2 cores positive, gleason 6 at less than 5%. Surgery was recommended and I was in the process of interviewing surgeons when my wife's oncologist recommended I get a 2nd opinion from a prostate oncologist.

I saw Dr Sholtz, in Marina Del Rey, and he said that the path reports indicated no tumor, but indolant cancer clusters that didn't need any treatment. He was concerned that my PSA history indicated that I had a large amount of PC somewhere that had yet to be uncovered and put me through several more tests.

A color doppler targeted biopsy in 11-08 found a large tumor in the transition zone, gleason 6 and 7. Because of my high PSA Dr. suspected lymph node involvement, 30% chance, and sent me to Holland for a Combidex MRI, even though bone and CT scans were clear.

Combidex MRI showed clear lymph nodes and a 2,5 cm tumor in the anterior. I was his 1st patient to come up clear on the Combidex which has a 96% accuracy,

I've been on a no meat and dairy diet since 12-08 and PSA reduce to 30 while I awaited the Combidex MRI.

The location of the tumor in the anterior apex next to the urethea makes a good surgical margin very unlikely. Currently on Casodex and Proscar for 8 weeks to shrink my 60 mm prostate. Treatment will be seeds followed by 5 weeks of IMRT while continuing on Casodex and Proscar. So far no side affects from the Casodex.

As of April 10 and 7 weeks on Casodex and Proscar PSA has gone from 30 to 0.62 and protate from 60mm to 32mm. Very minor side affects. Doc says all this indicates tumor is not aggessive

Scary. On the flip side, it is like the patients that have a positive biopsy and then get their prostate removed and have no cancer. Wow. Cancer is a tricky beast. I don't blame the guy for wanting his prostate out. I don't think it is any different than women who elect to have masectomy based on family history of breast cancer. It is obviously a personal choice, but it will be interesting to see what happens down the road with situations such as these.Father's Age 62 (now 63)Original Gleason 3+4=7, Post-Op Gleason- 4+3=7, DaVinci Surgery Aug 31, 2007Focally Positive Right Margin, One positive node. T3a N1 M0. Bone Scan/CT Negative (Sept. 10, 2007)Oct. 17 PSA 0.07Nov. 13 PSA 0.05Casodex adm. Nov 07, Lupron beg. Dec 03, 2007 2 yrs Radiation March 03-April 22, 2008- 8 weeks 5x a weekJuly 2, 08 PSA <.02Oct. 10, 08 PSA <.02Praying for a cured dad.

Hi Piano,I don't remember Arnon mentioning the age but he may have. It was a few years ago that he did the surgery. Not sure what imaging was done either. The only indication was the family history. It was contained inside the prostate. This was extreme but not a first time to hear of something like this. You all know Christina Applegate, the pretty young blonde girl on Married with Children TV show, who had a very tiny breast cancer that could easily have been removed with lumpectomy. She elected to have a double mastectomy performed to avoid the fate of her mother is still alive and aunts who died of breast cancer. My understanding is she is still undergoing "reconstructive surgery".

Interestingly, Dr. K has removed prostates that were not cancerous before. The reason was severe prostititis or BPH cases. QOL was improved for these patients as it was uncomfortable sitting or standing for them and they already had continence issues. It's kinda eye opening that we think of going in perfectly healthy except for the prostate cancer, and being concerned over the side effects of surgery, when there are many people going through worse symptoms than we do having these procedures all the time. In other words, prostate cancer is not the only reason a patient may elect to have an RP.

These decisions are very personal for all of us. That is why it's not good to criticize others decisions on their treatment modalities. See things through others eyes and you may have a new perspective. I certainly have changed my position on many things involving prostate cancer.

TonyAge 46 (44 when Dx)

Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007

1. I'm amazed the doctor would remove a prostate with no evidence of cancer or other major problems...just the suspicion of the patient. I guess some doctors will do anything but this sounds like poor medicine to me. My aunt had a mental illness; I suppose there is a doctor somewhere who will give me a lobotomy if I pay enough...

2. Sounds like the patient was extremely lucky.

3. Yeah, and per JohnT, what (good) doctor today would not insist on more complete analysis before sharpening up his knife?

4. David, this doesn't sound like a good ad for surgery at all...at least not to me.

5. I have scratched this physician off my list of worthy advisors. I'm glad you mentioned his name.

Just my take...all opinion...no fact...

Tudpock

Age 62

Gleason 4 +3 = 7

T1C

PSA 4.2

2 of 16 cores cancerous

27cc

Brachytherapy December 9, 2008. 73 Iodine-125 seeds. Procedure went great, catheter out before I went home, only minor discomfort. Regular activities resumed, everything continues to function normally as of 5/1/09.

Tony,Gosh, it's almost like "flip a coin" to decide what to do. If a doctor does the surgery and finds out it's not cancer, or conversely, that it is, then it's "darned if I do, or darned if I don't." I'm all for treatment options and if the patient has the deciding vote, then let the patient decide. My doc said it was entirely up to me and told me to seek second opinions, etc. I got the second opinion and still decided on the surgery. Ultimately, it's MY choice. I don't mind saying that if things don't turn out the way I'd hoped, then it's on me.

I've got a Dr. I trust implicitly, through several recommendations, and a lot of discussion time. On our initial visit, we spent 1 and 1/2 hours going over things (with a tape recorder going). I'm not looking back.

As for the patient Dr. Arnon operated on, Iwould like to see some follow-up stats as to his condition today.

Get to work on that, Tony, if you would please. Like you don't do enough around here already!

Tudpock and John T,All available tests were performed. All inconclusive and negative. The doctor is a good one and he advised against the surgery ~ and he is famous as one of the pioneers of laproscopic prostatectomies having performed the first ones in the US. But he also may have saved this patients life by agreeing to proceed. Guys we see people have elective surgeries all over the place that doctors will do for various reasons. And I don't think it should be the doctors decision not to in most cases of a mentally sound patient. There was definite reason to suspect this patient would eventually have or already have prostate cancer. And I bet that virtually all experienced urological surgeons and radiologists have faced similar situations. This doctor did mention that there were doctors who would refuse this procedure but...they would be the ones leaving this type of patient out to fend for himself and that isn't good practice either. You may want to ask your radiologists if they would have treated under the same circumstances, or would they in such cases. You might be surprised at their answers. These are stories you just don't here much about, but I have seen more than I ever thought about since I started my advocacy work and started attending these events. This very thought of pre-emptive intervention was a serious discussion at the Prostate Cancer Foundations scientific retreat last year. It's pretty amazing stuff!

Don't be too quick to judge, you need all the data to be in the shoes of this patient and the doctor,

TonyAge 46 (44 when Dx)

Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007

Coincidentally, I had to call my urologist and radiation oncologist today to set up my follow up appointments. And, it happened that both of them were able to take my call personally when I asked for them. Beyond the chit-chat about my case, I did ask them about this situation. Both of them thought that there must be more to the story as they could not imagine doing elective prostate removal in a situation like this. I told them no...all tests indicated no PCa. Both of them said they would NOT proceed with removing or radiating a prostate electively just because a patient thought he might have PCa. They would want proof of PCa before proceeding. Both said they would opt for more extensive biopsies but....no PCa, no treatment.

Perhaps they are just cautious or maybe concerned about being charged with malpractice should they agree to a potentially life changing procedure without evidence of need. However, they did reinforce my preconceived notion that elective prostate removal is irresponsible. However, I guess for every patient there is a doc. And, even though it is judgemental on my part, I'm still scratching this doc off my most admired list no matter how famous he is...

And, if realziggy was still with us, can you imagine his commentary about overtreatment???

Interesting discussion though...

Tudpock

Age 62

Gleason 4 +3 = 7

T1C

PSA 4.2

2 of 16 cores cancerous

27cc

Brachytherapy December 9, 2008. 73 Iodine-125 seeds. Procedure went great, catheter out before I went home, only minor discomfort. Regular activities resumed, everything continues to function normally as of 5/1/09.

Hi Tud,I agree completely that it should be classified as over treatment and extreme. The fact that your doctors would encourage a patient against it is no surprise to me. That was done in this case as well. It was not a snap decision, I'm sure. This I believe was in the 90's. Not too many more extensive ways to diagnose prostate cancers. I bet your urologist might not operate after radiation as well, I know when mine diagnosed me he said he wouldn't after radiation. But many doctors will do it as salvage surgery even though most say it's not worth it and won't do it. Both are extreme cases. LOL ok well one is very extreme.

TonyAge 46 (44 when Dx)

Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007

my dr/surgeon will not do salvage surgeries, period, no exception. in the case of the person who "elected" to have his prostate removed, and in the case of the story, was full of cancer, it would seem like a good "call". but still, i can't imagine any surgeon i know that would agree to the surgery without a true pc dx to back it up. can't imagine any insurance paying for it. and the surgeon would be at great liability risk to do the surgery under those circumstances. yes, we would have to know all the facts at hand when the decided to proceed was made, but, it is an extreme case at best. what if the removed prostate was shown to be 100% cancer free?

david in scAge 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5

3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3

Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9

David, interestingly,I don't think the patient would have cared if it was negative. In fact, that would be what they had hoped for. I bet this patient was disappointed that he didn't do it sooner. Tudpock is right this is very interesting. That's why I posted this. But it was strictly for conversation. I could never see me subjecting myself to surgery under these terms.

TonyAge 46 (44 when Dx)

Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007

Tony, it is good for conversation and thought. Where are the ethics of having patients decide to hack off parts of their body, internal or external, because they think something is wrong, whether it is diagnosed or not. That could border on a mental illness issue if you extended that line of thinking too far.

My wife has a toe that hurts all the time, tests and so forth for years can come up with nothing, yet her toe hurts constantly (true story), should she have it amputated by choice to end the pain, and if so, does she have the medical right to do so?

David in SCAge 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5

3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3

Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9

Obviously toe pain is not the same thing as the fear of mortality from cancer. However I do recall a football player (Ronnie Lott) who had a finger hacked off so that he would not miss a playoff game. LOL ~ but you could be right, he was a mental case, however.

But preventive surgeries for breast cancer is quite common. And there is a clinical trial for it right now. The example below is about having double mastectomies. It from the World reknowned Cleveland Clinic.

In addition there is another study from 2002 on removing ovaries to prevent breast cancer. Interesting note, 6% of the girls who had the ovaries removed had cancerous ovaries. It's from the National Cancer Institute:

In both cases the ladies are perfectly healthy. There is nobody questioning the ethics of these procedures because they do work.

Again, I would never do it, but I know a few guys that had localised disease but insisted to have the orchiectomy as well as RP. In fact it is still common for doctors to recommend young men with high risk of testicular cancer...to lop them off when it is found that they may become cancerous. Yuk.

I think you will see more of this in the future if the medical field can come up with a gene test similar to what has occured in breast cancer. I know two ladies that did a preemptive strike and had their breast removed very early in life due to the suffering they saw their mother go through and the fact that their genetic testing indicated they were at high risk. PSA tests are not failure proof as was the case with my father who is still doing well but who always had a normal psa yet had stage 3 prostate cancer after a biopsy. I have a friend who recently discovered he had stage 4 prostate cancer at age 55 and he had gotten a dre and psa every year since his early 40's. I am not trying to scare anyone but if a genetic test was available that indicated I was at risk for moderate to aggressive prostate cancer and I was 35 years old, I think that gland would be coming out. Life goes on quite well without your prostate!

Age 45 at DX

DX 8/05 Gleason 5, Mayo clinic Second Opinion Gleason 6, PSA 2.8

Da Vinci surgery Dr. Dasari, Centennial Nashville 9/24/05

Pathology Report Gleason 6, 15 % on left side only very near to the edge of capsule, too close to call on margins, doc's said to watch it very closely, final decision T2A

PSA's have basically ranged from <.04 to .05 for two years.

no E.D. and no Incontinence, feel very blessed

PSA Nov 07 = .06

PSA Dec 10th 07 =.07

PSA Jan 4th 2008= .1

Started Guided IMRT on January 7th, 2008 to treat prostate bed and lymph nodes, completed on March 6th, 2008